Wednesday, December 19, 2012

Passing the torch

There are all kinds of guilt. Italian guilt and Catholic guilt are what I know best, though. I was raised on it. It is important component of every mother’s arsenal of tools. I know this from personal experience.

My mother was a master at subtly deploying guilt. She used it deftly to mold my behavior. I only had to hear her say softly, “Oh Janet” with a dash of disappointment and I would dissolve into submission. Add in a concerned expression and I knew I was responsible for the fall of the Roman Empire. And worse. From afar she still has the power to manipulate my actions.

Guilt is powerful stuff.

When I became a mother, I wanted in. As generations before me, I expected to impart guilt (only in dire situations of course) to help Sam make the right choices. 

But here’s the thing. Guilt is a communication style with subtle nuances. I quickly learned it wasn’t so easy to use on a child with less than stellar communication skills. I sent periodic “guilt messages” only to find Sam was born with a seeming immunity to guilt.

How would I ever mold this child? Oh sure, there were other ways, but as the product of an Italian Catholic upbringing, I wanted him to understand our language: that being, of course, "language" of guilt. Of course I wanted him to understand facial expressions, body language and voice intonations, too, so I tried combining a little tutorial. 

I broke it down, insisting Sam look at my face. “What is Mommy feeling?” I asked. “Mommy is sad,” Sam invariably responded as he indifferently resumed his misdeed or infraction. I was a failure to my heritage.

Recently, though, Sam was foraging for cookies just before dinnertime. He ignored me as I asked him to put the cookies away. With a sad voice I absentmindedly said, “Oh Sam” and slowly shook my head. To my surprise, Sam turned and walked across the kitchen to hand me the package of cookies. Then he pulled my face close to his and looked into my eyes saying, “No sad. Happy Mommy. HAPPY Mommy!”

OHMYGOD! He got it! The torch has passed. I’m pretty sure I heard my mother and grandmother and all the generations preceding her singing praise like a heavenly choir.

I believe my work here is done. 

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Friday, December 14, 2012

Summer nights and rules for living

It was in many ways a perfect summer night.

We were enjoying the breeze of my mother’s porch, my sister Carol draped prettily over an oversized chair. We spoke of many things, with laughter punctuating the conversation.

I remember her laughter well. If I listen closely I can still hear it. I remember her smart and sassy responses. The slight smug smile. Grace. Dignity. Her brave soul. That accepting nature. The funny little snort sound when she really laughed. (Sorry Carol, it had to be said). All that coupled with her killer sense of style.  

Given the overall lighthearted nature of the conversation, no one would have guessed Carol was battling terminal cancer. That was the beauty of Carol. I was trying to wrap my arms around autism. I knew my struggle paled in comparison.

It was on this night we jointly developed our rules for living, most I still live by today. In honor of Carol’s birthday, I’d like to share them: 

• Find the humor in life. Remember to laugh.
• If someone asks if your fake diamond earrings are "real" the
correct answer is yes. If you can touch them they are real.
• You are not required to answer stupid questions, but stupid questions are not an excuse to be rude.
• Be considerate – you aren’t the only one fighting a battle.
• Wear pink sometimes. Pink is a very good color.
• If you have cancer, it is OK use it to your advantage once in a while.
• Don’t eat snakes. Just don't.
• Do whatever you need to do to get from here to tomorrow, as long as it is (mostly) legal.
• If today isn’t a good day, tomorrow will be. A good day will eventually come.
• Don’t expect happiness to find you. Go look for it.
• For chemo, wear a sparkly cardigan. It is both stylish and provides good access for your port. In fact always wear something a little sparkly.
• Diamonds are nice but anything that sparkles will do.
• There is no such thing as denial. Denial is just hope in disguise.

And lastly and possibly my favorite:
• Always accessorize. Always.

On this cold December day will wear my sparkly scarf and remember Carol. I will remember the laughter and the tears. But mostly the laughter. Happy birthday little sister. 

Thursday, December 6, 2012

Oh the people we've met

Through our journey with autism, we've connected with some fascinating and talented people. One of those people is Scott Letine. Over the last week I've had the pleasure of trading emails and corresponding via Facebook. We've had an interesting dialog and he has asked for space on my blog.  For that reason, I am turning my blog over to Scott today. 

Scott is 25 and hails from Billerica, Massachusetts. He is diagnosed with high-functioning autism (PDD-NOS/Aspergers) and is a graduate of Merrimack College. He is currently an office intern at the Arc of Massachusetts in Waltham where he works to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities. He is also a talented writer and has devoted his considerable talent toward providing insight into his hopes and dreams. 

What follows is a sampling of his poetry. Thank you for taking the time to read on. 

Just a Normal Day         
Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day
Feeling unsure
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night
Trying to connect with people my age
Attempting to reveal my unique vision
But ending up alone and unengaged
Feeling like my needs a total revision
Just a normal day

Can’t You See
Can’t you see
I just want to have a friend
Can’t you see
I need the same connections in the end
Can’t you see
I want a good job
Can’t you see
I need to have stability and dependence and part of the general mob
Can’t you see
I want to be independent on my own
Can’t you see
I want to be able to have my own home
Can’t you see
I want the same things as everyone else
Can’t you see
I want to be appreciated for myself

The Ode to the Autistic Man
Try to understand the challenges that I face
I would like to be accepted as a human in all places
Where I will end up in life I don’t know
But I hope to be successful wherever I go
I would like to expand my social skills in life
Making new friends would be very nice
Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day
By the age of 20, I will have made tremendous strides
I know in the future, life will continue to be an interesting ride
I have made new friends by the year
I will be given tremendous respect by my family and peers
I hope to get noted for bringing the issue of autism to the common man
So that autistic people can be accepted in this great land
Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

I am sure Scott would love to hear your feedback so please post here or on my Blending with Autism Facebook page. You can also contact scott directly via email at

Saturday, December 1, 2012

About dreams

Dreams are fascinating. Those strange and magical places we visit while we sleep: sometimes terrifying, sometimes beyond wonderful. Sometimes just plain weird.

I remember recurring childhood dream about a box  of 128 Crayola crayons (including the coveted gold and silver). The dream had many variations but always ended the same way: with my treasured box of crayons carefully tucked under my pillow for safe keeping.

Each morning as I woke from that dream I looked under my pillow. Though I knew the crayons wouldn't be there, I still hoped the crayons transcended from a dream to reality. It never happened, of course. That didn't stop me from enjoying my time in that dream.

Many mornings as I watch Sam wipe the sleep from his eyes I wonder if he dreams as I did. Does he dream of playing basketball and sinking the perfect shot or dream of fabulous colors? Does he think dreams are real? Does he dream at all?

“Sam,” I ask, “how did you sleep?” With his peculiar voice inflections he responds, “I slept  OK.” Whether he slept one hour or eight, the answer is always the same. “I slept OK.” Attempting to prolong the conversation I ask, “Did you dream?” “Yes,” he always answers. “What did you dream about?” I probe. Again the answer is always the same: “Bed.” I interject the word “…and...” and he responds, “...and sleep.” "You dreamed about bed and sleep?" I ask incredulously.  "Yes," he answers.

“OK Sam, let’s talk about dreams.” He knows the drill now and provides me a rote reply, “Yes. Dream. Sleep. Bed.” “Do you know where dreams come from?” I ask. He scripts, “From your Sam’s brain.”  “Yes. It is your imagination while you sleep. Do you know about imagination?” I ask. “Elmo’s imagination,” he says referencing an Elmo song about imagination as he turns to something else. How much is he understanding? I am seldom sure.

My dream about the box of Crayola crayons has long been gone. I have a newer dream in its place, though. I dream of conversing with Sam with relative ease. It is a dream I have with frequency. I dream Sam is able to tell me all the things he currently can't. It is a happy dream.

Each time I wake from this dream I repeat the emotional equivalent of looking under my pillow for my crayons: that brief moment of hope my dream is real.

It is not, of course. But I will dream of it again another day, and another day and still another day after that. Who knows, maybe, just maybe, one morning the dream will continue into my waking hours and and I will unlock the mysteries of my beautiful boy.

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Thursday, November 29, 2012

Nantucket, a vice president and some snappy dressers.

Thanksgiving weekend has evolved into a tradition for us the last few years: Visit Nantucket, get our jeep home and stalk Vice President Joe Biden. Yes, we are stalkers. Well, maybe not all of us. Just Tony.

Joe Biden has been spending Thanksgiving weekend on Nantucket longer than us - 30 plus years I am told. Now that he travels with the Secret Service in tow, he is hard to miss. As for the "stalking," it is pretty harmless: Tony wanders around town looking for the Secret Service to figure out where Joe Biden is in hopes of a handshake and photo opportunity. At the least, he scores a sighting. 

As usual, by Friday afternoon, Tony had spotted him. "Satisfied?" I asked. "Yes." "Good. We won't have to be arrested for stalking." I said. With that off the checklist, we were free to run through the remainder of our tasks.

On Saturday, Tony, Sam and I made a brief return to town for errands and quickly parted company: Tony off with his checklist while Sam and I took a more leisurely walk up Main Street. We paused to listen to a street musician. As an opportunity to practice some skills, I gave Sam money for the musician's beautiful music. After a few minutes spent figuring out what to do, Sam finally placed the money correctly into the growing pile of dollars within the violin case.

We lingered longer. I noticed a man nearby watching Sam with great interest. I noticed his eyes dart back and forth between Sam and some other people. They seemed to continually land on a man seated opposite us: It clicked. Relaxing behind a pair of sunglasses was Joe Biden.

My first reaction was oh no, the Secret Service guy is watching us! Sam often moves and behaves in unpredictable ways. This may not end well.

I approached the man and said, "You look like someone who knows stuff." He eyed me warily and responded, "What kind of stuff do you think I know?" I smiled and said, "Well, stuff like what will happen if my son wanders over to where the Vice President is sitting? Will it be okay?" He just shrugged indicating others had done that.

"It's not that simple" I said. "He, well, he has a different way of doing things. And he is kind of big. It all may appear peculiar to someone like you." His expression changed. I could see he understood as his face relaxed. "Take your son over and introduce him," he advised.

Sam, way ahead of us, was already wandering that way.

I caught up with Sam. Once we were near Joe Biden I secured Sam’s focus on the man now seated in front of him. "Sammy, who is the Vice President of the United States?" I asked. Sam responded "Barak Obama!" "Sammy," I said, "who is the VICE President?" This time Sam answered crisply, "Joe Biden is a Vice President of a United States." At that, Joe Biden stood up. With his famous smile he shook Sam’s hand and said, "Hi Sam. I am Joe Biden and this is my son." I leaned over to Sam and said, "the attorney general."

Beau Biden offed to take a picture of us with his father. As he took my phone, he commented, "I remember you from last year." I responded, "You have a very good memory." We thanked them, walked over to the Secret Service man to say goodbye as well. "You did well," he said to Sam.

A few minutes later we met up with Tony. The first words out of his mouth were about the Secret Service men hovering around Main Street. He added if we walked over we might have another photo opportunity. I responded casually, “Been there, done that.” I handed him my phone with the photo. "Last year's photo?" Tony asked. I directed him to examine the photo a little more closely.

"You got a new photo!" "Yup." I said smugly, "No stalking either. His son remembered us from last year, too. I think it must be because Sam and I are such snappy dressers." Tony answered shaking his head, "Oh Janet. You keep telling yourself that."

As I turned to see Sam hug a nearby tree, I said, “You know, I think I just will." 

Thanks for being so gracious, Joe Biden. See you next year.